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If you have a pet of any kind, you know the joy that pets bring into our lives. While they do come with a certain level of commitment and work, they offer benefits that far outweigh what they require of us. Now that I am six years into my primary chronic illness, sarcoidosis, I feel like I can discuss pet therapy with conviction. Prior to becoming "sick," I always had a pet - from childhood on. It wasn't really until I became ill, however, that I realized what my dogs had done for my mental health. My physical health has also improved thanks to being a pet-owner. Here are 10 ways owning a pet can help you with your chronic illness:
Charlie the Dachshund is always there for me. He will wait on me wherever I go and follow me no matter what. He needs my help to get his food, water, and to let him outside. It feels good to be needed by someone or something that doesn't really expect much in return, ESPECIALLY with a chronic illness. I can be sick, tired, or both in front of him and not feel self-conscious. I can tell him all my thoughts and fears, and he won't judge me. I can even moan out loud in pain or cry at my medical misfortune and he doesn't flinch. Instead, he meets me with loving kindness and is a steady force of calm in my daily life.
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In 2016, at the age of 40, I received a sarcoidosis diagnosis that rocked my entire world. My kids were 4, 6, and 14 at the time. I was at the pinnacle of my NP career, and I was coming off a 2 year "break" from full-time work. From 2014-2016 I was working 2 or 3 days a week and was able to spend more time with my family. I was also able to go to the gym regularly and prepare healthy meals. I felt like my health was also better than it had been in the past 7 years. My sarcoidosis symptoms started abruptly in September and were very noticeable. I would walk to my car that was parked on a hill after work and be extremely short of breath (think huffing and puffing as if I had just sprinted 100 yards). I would go to the gym and feel completely wiped out after 20 minutes of my workout when normally my full hour workout left me energized and not depleted. I would walk out of an exam room and forget the name of a medication or stop mid-sentence when trying to give my nurse a verbal order. I also felt very dizzy and lightheaded and was not sure what was causing all of my symptoms. I decided to go see my colleagues in cardiology once I realized my blood pressure was dropping. My blood pressure was dropping as low as 80s/50s. I was also having numbness and tingling in both arms and hands and my hands were turning blue. I thought there had to be some type of blockage or blood flow issue. Ultrasound evaluation of my carotid arteries and upper extremities were normal. EKG, basic labs, and chest x-ray were normal. My echocardiogram (heart ultrasound) was the first test that came back abnormal. It showed an elevated pressure reading between my heart and lungs (pulmonary hypertension). My providers were not really sure what would be causing that because I was "so healthy." I plugged along from early September to late September before seeking a second opinion. My symptoms were progressing and persistent, and I knew something was not right with my body. My fatigue was worsening to the point I would count down the hours until I could get into bed. My shortness of breath was limiting my daily activities and I was beginning to cough every time I ate or talked for more than a few minutes. I also had an episode while driving where the left side of my face went numb and my breathing became very shallow and irregular. That sent me straight to my second opinion! That second provider ordered a chest CT and a brain MRI which were performed on a Thursday morning. That following Monday in early October, I was at work for a 12-hour day. I received a phone call mid-morning from a nurse in my second opinion provider's office. The nurse said "you have brain lesions and you need to see a neurologist to rule out MS (multiple sclerosis). You also have enlarged lymph nodes throughout your chest and you need to see an oncologist to rule out lymphoma." As you can imagine, I was in shock and called my manager to tell her I needed to leave for the day and to go speak to my husband and my parents. Did I mention my youngest child was 4 years old? Fast forward to a bronchoscopy mid-October with lymph node and lung needle biopsy as well as a trip to a neurologist which resulted in EEG and extensive lab testing. My neurologist ordered more MRIs and tried to ease my fears of MS (though he could not totally rule MS out). My pulmonologist was unable to get a conclusive diagnosis from the bronchoscopy and recommended a mediastinoscopy which would involve drilling through my sternum (breastbone) to remove lymph node tissue for biopsy. I told him that I felt a large lymph node above my left clavicle and we opted to have that node excised for pathology instead of the mediastinoscopy. That left supraclavicular node excision was done the last week in November under general anesthesia at the hospital since it was so close to my carotid artery and jugular vein. That node biopsy was negative for lymphoma and positive for non-caseating granulomas (the definitive diagnosis for sarcoidosis). I was started on 60 mg of Prednisone per day that would be tapered over 6-12 months and referred to a rheumatologist.
After starting high dose Prednisone in December of 2016, I was placed on weekly Methotrexate injections which (who knew at the time?) would last another 4 years. The only reason I stopped Methotrexate is because I later developed psoriasis (for that story, click here). I was finally able to wean off prednisone late May 2017 though the side effects lingered at least another 6 months. I plan to write an entire post on surviving long-term prednisone, but I will leave it at that for now. 2017 seemed somewhat stable throughout the end of that year, but the next 3-4 years had their own hiccups. Over those next 3-4 years I found out that the sarcoidosis was affecting my esophagus. 3 EGDs in 6 months and tons of other GI testing led to the conclusion that my esophagus has no peristalsis ("squeeze'). The only thing helping my food reach my stomach is gravity. This makes eating challenging, especially talking while eating (cough, choke). I also found out I had sarcoidosis spleen lesions, ocular involvement, and another fun lung condition called bronchiectasis. For the esophageal involvement, I take 2 pills per day for life. For the bronchiectasis, I take one pill twice a day for life. See how I organize my meds here. I have also been tested and monitored for small fiber neuropathy. The MS surveillance continues. My neuropathy is currently of unknown etiology, but my neurologist does think sarcoid plays a role. I was also sent to endocrinology at one point to check for adrenal insufficiency after steroids since my blood sugar and blood pressure still bottom out at times. Another hiccup involved an overnight hospital stay and a kidney biopsy (ouch by the way) after I noticed my urine was foamy like dishwashing liquid (that is abnormal and a sign of protein in your urine- tell your provider if you ever see this). I'm on another daily pill to help protect my kidneys for that confirmed renal sarcoidosis. Every year I see a rheumatologist, general cardiologist, pulmonary hypertension cardiologist, pulmonologist, gastroenterologist, neurologist, ophthalmologist, dermatologist, nephrologist, and my PCP and Gyn. I now see a counselor regularly to help me process all that I juggle. I have mandatory quarterly labs, an annual heart ultrasound, CT's and MRI's every year, breathing tests every year, and whatever else comes up. Gone are the days of a routine wellness visit or not meeting my deductible. Gone are the days of only taking a multivitamin. I sleep with oxygen mainly for the pulmonary hypertension, and I'm okay with that. It was my little secret until now. Right now, my sarcoidosis seems fairly well-controlled with Humira. When I met my rheumatologist in 2016, he told me he hoped he could get me into remission within 2 years. That was 5 and a half years ago. I haven't given up hope and I will continue to fight this fight as long as I can.💜 Below, I have included two great visual aids to raise awareness for our family and friends. The mental health effects of sarcoidosis are widespread and often overlooked by our clinicians. Sometimes just "being there" is all we need from our loved ones. 💜
I hope this post has raised your awareness of sarcoidosis whether you are a patient, loved one, or healthcare professional. As I told a friend after she learned of my chronic illness, "My entire life changed after being diagnosed with sarcoidosis, but I didn't stop living." I hope this offers hope to anyone who is newly diagnosed or any sarcoidosis patient struggling right now. I see you. 💜 Jan 30, 2021- Feb 3, 2021 Red, painful eyes start with painful vision and light sensitivity (UVEITIS). Feb 3, 2020-Feb 8, 2020 Tiny dots of a rash begin on my neck- they don't itch, burn, or hurt at this point. I call my dermatologist to schedule a biopsy, assuming this must be related to my sarcoidosis. Feb 3-March 8, 2021 Rash kept getting bigger and more painful. Not responding to topical Rx creams. Went for 2nd biopsy on March 8th, the day I started my 30-day medical leave. Focused on walking, sleeping, hydrating, and eating clean. Also journaling and resting. March 8-April 8, 2021 Off work. Tried the AIP Diet. No gluten, no dairy, no sugar. Derm and Rheum also put heads together to double my Methotrexate dose. The diet was difficult but my joints and skin "felt" better even though my skin still needed lots of help! April 8- August 8, 2021 Back at work. Still working covid. Boys off for the summer during some of that time. Started Humira in May 2021 and stopped Methotrexate. Skin would wax and wane, but I would say it eventually cleared by early to mid-August. Joints feel much better on Humira. Energy level too. September 2021 Had my 2nd episode of uveitis. That responded quickly to Prednisone eye drops. Skin pretty clear, but under more stress with some work and family stuff. Delta variant of covid is ravaging my patient population and friends. Evidence of proteinuria again so will follow-up with my nephrologist (that's more sarc-related, less psoriasis-related). Still on Humira. Echo and PFT's slightly worse than last year, but lung & spleen CT's show that the Humira is controlling my sarcoidosis. March 2022 I have had at least 2 more episodes of uveitis since the last update. Skin stays mostly clear with the occasional flare in the anterior portion (front) of my neck. I wrote this piece for all of my fellow Psoriasis Warriors who are walking this painful, lonely road. It is SO HARD. One can think they are not a vain person, but when your LARGEST ORGAN (your skin) is literally on fire with inflammation, it's hard to "hide" from vanity, comparison, self-loathing, and frustration. If you love someone with psoriasis, please share this with them and with others who love them. I hope it brings someone comfort to know they are not alone and that there are those people who will love us no matter what.
So there you have it! All my favorites from February 2022! I hope you find something you like or even just a reminder of something you need or would like to try out. That's why I post my favorites- they are fun and I like reading or watching other people's favorites. Feel free to leave comments below! I would love to hear from you! When I sat down to do my YEARLY REVIEW at the end of 2021, I was literally drained. I was exhausted: mentally, physically, emotionally, and spiritually. I could barely even form a sentence in my head. As I started PLANNING MY YEAR AHEAD as I usually do each holiday season, I started to see just how many things were already on my calendar. I am not sure if I felt disbelief, disgust, or disenchantment. "That will be cancelled. That won't happen. I doubt we actually do that." After two years of cancelled, postponed, and rescheduled plans, I almost reached for a pencil instead of a pen. I am eternally optimistic, but I am TIRED. You know those days where you sit down in the evening and you feel like you've been to DisneyWorld with 2 toddlers and 2 strollers and a newborn? Those days where you are driving home from a busy day in family practice and you aren't even exactly sure what your own name is (much less a disease or dosage of medication)? I feel like we've all had TWO YEARS of those days. So I decided to just boycott goals altogether for 2022. I wasn't going to make goal(s) for Health, Finance, Education, Personal Growth, Career, Family, Marriage, Spirituality, Home, etc like I usually do every year. The thought of doing that after I wrote my GOAL SETTING post was just as insurmountable as climbing Mount Everest (for this girl who already battles a chronic lung disease). Choosing a word for the year? Meh. And usually I am ALL OVER THAT!. But the only words that have come to mind lately (that don't include mild profanity) are flexibility, change, resiliency, and stamina. And I realize all of those words are entrenched in what I have LEARNED FROM THIS PANDEMIC as a frontline family NP. So I haven't chosen a word just yet. And I'm not sure that I will choose one for 2022.
And what I'm finding is that wearing ACTUAL CLOTHES (no scrubs, no standard mom "leggings and a tee" uniform) makes me feel better. It makes me feel better about myself, my life, my marriage, my work, and my day. I never thought I would be typing this, but it's TRUE. I choose healthier foods and move more when my pants have a zipper and a button. 👖 I try to have healthier emotional reactions when I don't look like I just rolled out of bed. 🧘♀️ I am reminded of my passion for medicine when I am dressed the professional part. 👩⚕️ I am even nicer to my husband when I like my reflection in the mirror. 👩❤️👨 I feel better about spending all the money I have spent on clothes now that I am actually wearing them. 😜 So there you have it. I set one goal for 2022. It is simple and it used to be automatic. What happened to the girl who loved shoes and purses and dressing up? Where did she go? Who and what took her from me? I feel her trying to emerge again. She is ready for this new year. She has no idea what's going to happen and no control over any of it. But she is showing up. And she looks and feels AMAZING. 👗 *** most of the time
*** except on Mondays *** or on days when her kids are off the chain *** but she is trying ☀️ How on earth is it already time for 2022? Where did 2021 go? I'm not sure, BUT, I am ready for 2022. 2021 was messy and ugly in many ways. On a personal level, it was unkind to my health. I received a new diagnosis of psoriasis in March and had to miss an entire month of work while my body was adjusting to new medications and my skin was trying to heal. October revealed an unexpected opportunistic infection (since I'm immunocompromised) that required strong antibiotics and made me feel pretty lousy. Since November 1, I have been hobbling around on painful swollen knees and am facing unexpected knee surgery. Pity party? Nah, not my style. Swallowing it all? That's my go-to. When I think about my health and how unfair it is that I've tried to take care of my body my whole life and I'm still getting the short end of the health stick, I can get pretty low. Then I think of all my patients who have it "worse." And I swallow it. I shove it down. I brush it off. But is that healthy? NOOOOOOOOOOOOOOOOOOO. So I'm learning to acknowledge my own feelings. I'm sad that my body is not behaving. I'm angry in some ways. I'm frustrated for sure. I'm still thankful that I can work for right now. I am beyond grateful for my parents who live 2 doors down and help me daily. I'm tired. I'm realizing I have X amount of energy each day and my family needs the bulk of it. If my job takes most of it then I'm robbing my family of my best self. Filing for disability has been on my mind more in the past 9 months than it ever has during this 5 year sarcoidosis journey. So what next? New year, new adventures, new planner, new goals, new.... what else is new now that I'm 45? I have a lot of old. Old hurts. Old unmet needs. Old furniture. Old clothes. Old shame. Old junk in my kitchen drawers. Old relationship issues that deserve a conversation. An old van that has chipping paint but it's paid for and gets us to ball tournaments. I think the reflex for all of us is to replace the old with the new and that will make it all better. New clothes. The newest kitchen gadget. New furniture or decor, ON TREND, my dear! A shiny new SUV that costs more than most people's annual salary and gets 12 mpg. But boy does it look good and that's what counts, right? I'm no longer trying to replace the old just by reflex. It's harder to keep it and try to keep it running. Purging the clothes and kids' toys is definitely good, but when we throw out things that still work but aren't "good enough" for whatever standards, what does that say about us? Who and what have you thrown away and replaced with newer and easier? (ouch)... I'm falling apart health-wise in a lot of ways, but I "still work." Will my family or employer throw me out? Will my friends forget about me if I'm not as active and fun as I used to be? Where does that leave me? As an Enneagram 3 (Performer, Success Driven), I've been gut-punched this year by my body's betrayal. But God must be telling me something. I know He has a plan. I have to trust and slow down and just be. NOT. MY. STRONG. SUIT. Perhaps 2021 leaves you feeling like I do. Maybe you lost someone you loved. Maybe you were also betrayed by either your body or someone you trusted. Maybe you felt out of control all year like I did? Maybe you spent too many hours googling vaccines and viruses and death tolls like most of the world. Maybe you feel all the "junk" you've shoved down and swallowed for however long starting to surface and want to be named and noticed. I feel that with you. 2022 can be a renewal for us, my friends. I'm going to intentionally name what's working, what's not working, what is worth repair, and what really needs to be purged from my life. This goes for relationships, time spent, health choices, what I consume digitally and physically, items in my home and closet, and my thought life. I'm going to check myself when I just want to replace the old for that quick dopamine hit. I'm going to try to sit in the uncomfortable and define what's causing it. I can't keep running 90 mph. 2022 is for slowing down. It is for evaluation. It is for growing up, finally. Godspeed. I see it every year. It starts around the first week of November and it lasts through the middle of January. The holiday blues. As I’ve gotten older, I’ve actually slowed down enough to think about trends in my practice. Sure there is an actual diagnosis of seasonal affective disorder, but this is different. This is deeper. This is hard. And here’s how I see it every day for two months straight in my exam rooms: Me: Hey Mrs. Jones - it is so good to see you. I know we had to zoom for our last visit. What’s new in your life? Are you ready for Christmas? Do you have to cook for Thanksgiving? Are y’all going anywhere? Mrs Jones: oh you know, I will be cooking for the family for Thanksgiving. And the children and the grandchildren may stop by for Christmas. No... I don’t go anywhere. I’m ready as I’ll ever be. Blank stare. Obvious reflection. Anyway how are your boys? Are they ready for Christmas? Do you have to cook for Thanksgiving? Me: oh yes I will be making my Mammaw’s dressing, sweet potato casserole from an old Birmingham recipe from one of my mother’s friend’s mothers, my layered salad that a nurse I used to work with taught me how to make. Gosh that was over 25 years ago now. Blank stare. Obvious reflection. Daddy will fry the turkey and my husband will fix the ham and a peanut butter pie. Mama will make the deviled eggs and the Waldorf salad. I will make my mother-in-law‘s corn bean casserole and some homemade mashed potatoes. Of course we will have rolls and cranberry sauce. Another blank stare. I haven’t seen my mother-in-law in over five years. The boys? Oh yes, they are more than ready for Christmas. We got them a matchbox Advent calendar they can’t wait to get started on. They’re growing up so fast. Blank stare. Obvious reflection. The oldest will be home from the Air Force. He and his girlfriend will be together the whole time I’m sure. I smile. But I’m nearly in tears. What is going on? And we sit for a moment. Two women born of different decades and sometimes different skin colors who have lived two very different lives at the outsider’s glance, but are so alike on the inside that it’s haunting. Her daughter is sitting beside her. They look and act so much alike it makes me smile from the inside out. I’m sure that’s what people say when they see me with my mother. I don’t have a daughter. Will my boys take care of me? Alright, get it together Amy. We finish out our actual medical visit and say our go-to goodbyes: Happy Holidays. Y’all be safe. Call me if you need me. And now, after ALL these years, I often hear “you know I love you.” And I believe it’s true. It’s not forced. It’s been earned. Is it against the rules? No, not my rules it’s not. Truth be told, I love her too. Maybe because I see myself in her and I’m cheering for myself in my old age. I’m giving myself a head start and saving myself a seat. I’ve practiced in Kentucky and in Georgia. I worked in a nursing home for six years and then made rounds as a nurse practitioner in that very same nursing home. I’m an old soul myself so I think I draw my elderly patients in and they stick. I stick to them too, and I think they know it. I’ve had so many Mrs. Jones over my 17 years. I’ve had Mr. Jones and Little Johnny Jones or Little Sally Jones as well, but I am so connected to Mrs. Jones that I can almost finish her sentence. Now I’m driving home and this 2 Lane Highway surrounded by trees and cows and horses makes me feel like I could be in any of the four states I’ve lived. It’s familiar and so are these thoughts. I’m a little girl in my childhood home with my brother and my parents and we just came home from candlelight Christmas Eve service and mama made lasagna. I haven’t really been hurt yet. I don’t know what it feels like to love somebody besides my family. I feel safe and secure and like I can do anything in this world. How did Mrs. Jones feel at this age? How did you feel at 10 years old? Now I’m driving home from Tuscaloosa with Delta Zeta on my back windshield. My finals are over. I get to see my boyfriend. I’m taking pre-med classes as well as a full nursing load, but I’ve been hurt by now. I’ve been disappointed and lied to by some people I trusted. But it’s the holidays you see, and I still feel like I’ve got a handle on things. I wonder what Mrs. Jones was doing at 20 years old? Had you been hurt by then? Oh wow. I didn’t really see this coming. Or did I? I’m sitting alone in my first marital home. Half my furniture is gone. Someone I love deeply told me I don't really need a Christmas tree this year because "it's just you." Am I not enough for a tree? Who am I by myself anyway? I’m driving to Georgia for Christmas. I don’t think I’ve ever been this sad in my life. I wonder what Mrs. Jones was doing when she was 30 years old? Was her heart broken like mine? Was yours? Gather around now. It’s time to eat. My baby boy is four years old and can’t seem to stop smiling. God gave him to me for sure. The first one I carried is six and almost as smart as I am. The one I didn’t carry but I’ve fed and loved now for seven years is sitting right next to me. Is he thinking about his mama? Will he ever see her again? Tiny pieces of my heart crumble for him. I just started taking prednisone for an incurable autoimmune disease I had to look up on the Internet. Lord have mercy and I really do mean "please Lord have some mercy." I’m only about 3 1/2 weeks into a lifelong diagnosis and I don’t know what the future holds. I’m scared. I’m sad. Merry Christmas y’all. It’s the holidays, right? I wonder how old Mrs. Jones was when she first questioned her mortality? How old were you? Were you 40 years old like me with a child in pre-K, one in first grade, and one silently falling apart right in front of you? You see that’s what the holiday blues are. They are every heartbreak and broken promise. They are all the fears and all the lost relationships. They are that empty seat at the table. The phone that barely rings. They are the one that got away and the one that stayed too long. They are your mother, your father, and your children. They are every husband you’ve ever had. How can they not be? We can’t erase our memories. I don’t have a cure for the holiday blues. I think they’re part of life. Mrs. Jones might tell me they get better with each decade or she might tell me they grow and take up more space than we should allow. I’m scared to ask her. None of us even talk about it really. We just say Merry Christmas, Happy Holidays, y’all be safe. So this is my letter to you at age 45. Some heartaches of mine have healed and some are still there. I don’t think we should only remember the good times because that’s not what made us. It’s certainly not what made me today sitting right here baring my soul and giving you the permission to bare yours. Acknowledge the things that built you. Godspeed. This goes out to every Mrs. Jones that has ever allowed me to know her. She is me and I am her. And I thank God for that.
I do want you to listen to the podcast, because I think there are some big pearls in this interview, but here are a few highlights:
Find out who is in your circle:
Plan as much as you can ahead of time:
Final pro tips: -Keep a medical binder of all your paperwork -Have a designated inbox for all incoming papers (follow The Planning Woman for more on this) -Apply for intermittent FMLA with your employer -My personal pro tip: PET THERAPY! 🐶🐱 Charlie the Dachshund makes everything better!
This is a great question and one I have seen asked many times on many platforms.
I have 2 autoimmune diseases (sarcoidosis and psoriasis) and take Humira. Prior to Humira, I was on Methotrexate. I took my first Pfizer dose in December 2020, second in January 2021, and I received my third in Aug 2021 since I qualify for the third dose now. I read the pfizer trial and the data is phenomenal. I had zero side effects all 3x other than a sore arm. That is my patient experience. As a primary care provider, I manage a panel of about 1800–2k patients. I’ve had ZERO deaths or serious side effects from the vaccine in my panel. I have had 2 deaths (age 78 with lung disease, age 49 and healthy), over 225 infections, countless hospitalizations - some requiring ventilation, and I am seeing long-term effects from COVID: stroke, pulmonary embolus, neuropathy, still haven’t regained taste / smell, palpitations & arrhythmias, chronic fatigue, chronic brain fog, and lung damage. I think the vaccine is being “pushed” because I know I can’t keep up with the volume of sick patients I’ve seen in the past 18 months. I know every ICU in my state is now on diversion. I know we as healthcare workers are leaving the field due to burnout. I’ve never seen anything like it and I’ve been a nurse 23 years, an NP for 17 of those. ***Always consult your PCP for your healthcare. I trust and believe in the vaccine, but I do not think it should be mandatory. Let us not bicker over vaccine choices, but let us come together and try to get out of this public health crisis!*** How to have an effective office visit with your provider: There are some tried and true ways to have a productive, meaningful visit with your medical provider. As a patient with a chronic illness AND a family nurse practitioner, I have the inside track.
If you need more frequent office visits, ask for them. Your provider is PAID to see you. Your insurance is billed for those visits where as most providers do not bill for phone calls or portal messages. If you end up needing them before your designated 3 or 6 month follow-up and you have more than 1-2 simple questions, PLEASE schedule an office visit. As a provider with complicated patients of my own, I would much rather have that patient in the office with me to have a discussion than to do multiple back-and-forths over the portal. It’s better patient care. AND my time is used wisely in my employer’s mindset. Medicine is a business. Although so many of us really do care!!! |